posted
I am feeling really down and I could use some encouragement. I think the beginning of a new year can do that. Another year here and I am still quite sick. I have posted here many times. After the usual misdiagnosis for years, I started treatment 14 months ago. I have improved, but on days like today that is really hard to see and remember.
I just can't believe that I am still this sick. I have been reading success stories. Thank you for those who post them. I read how many people take 2 and 3 or more years to get better. I just don't know how all of you endured that.
Thanks for posting your stories - lymers, cactus, TF, lymetoo. The support of the people of lymenet (dave, susan, beth, kris) is the only way I have made it this far.
I would say that I am herxing, but I pulse 3 weeks on/ 1 week off. I am on my off week. So maybe this flare and not herx. I keep trying to determine if I have a monthly flare. The pulsing and how sick I have been haven't allowed me to determine that.
As one friend suggested maybe I getting well enough to notice a flare. Wouldn't that be great.
Anyway, just having a really tough one. Need to reach out for hugs. Thanks to those who have already done that through PM (susan, dave).
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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posted
Thanks. ARGH. I just feel like I will never, ever get better. I just don't understand how it can possibly take so long and how there can be incredible herxes even 16 months into treatement. I just want it to stop. ARGH!!!
Thanks everyone for providing a place to vent.
Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Kathy,
I understand and I think alot of people do.
I am getting slowly better but also have a long way to go.
It happens so slowly that sometimes I almost forget how much worse I felt before.
I told my LLMD that it would be helpful if we could feel for a few seconds, how bad we felt before, and then go back to now to compare.
Almost like when you go to the eye Dr and they ask you "which lens can you see better out of...the first one or the second one?" and sometimes you have to go back and forth a couple times to compare.
My LLMD told me about a patient he treated who just didn't seem to be getting better, but she never gave up, and 3 years into treatment she got better.
Have faith. Time is going to pass anyway, so better to stick with it and move slowly toward recovery than to give up and have your health decline.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Hang on as treatment is long and debilitating. You;re not alone here. sometime keeping a journal (if you dare have the energy) can give you something to look back on. Seeing just how sick you used to be is lost and a journal will help remind you of your progress even if it's slow. Make sure your LLMD is giving plenty of detox (glutathione is my favorite) and is changing up your protocol as needed. Blessings, Trish
Posts: 142 | From Sturbridge, MA | Registered: Jul 2006
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Kathy, Sorry you are having a rough time. You have every right to feel down.
Sending you big hugs. We have been on a long journey with Lyme and Co's with our teenage daughter.
Going into year three, but only treated for 8 weeks back in 2008, then saw a pediatrician LLMD in May 2009, and things are improving, but not as quickly as I had hoped.
We have good days and bad days. I have to say things are much better because of Lyme treatment, but going into 8 months of treatment , we still have a way to go.
I feel relieved when she has good days and think we are getting there only to have bad days follow.
The ups and downs are so hard to take. But you will get there. Keep treating, rest, don't push yourself.
Our daughter is finally back in school part time after missing the end of 6th gr, homebound for all of 7th. Now part time for 8th.
I was beginning to forget what life was before Lyme. Lyme became a way of life .
I have learned you can NEVER give up, because tomorrow might be the day that you will do better, and then better and then better!!!
Just wanted you to know that I understand your frustration. Better days are coming.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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Thanks so much for the kind words. I went to my therapist, a kind and understanding man tonight. That helped some. It is good to get it all out and have someone listen.
Dekorator - you are so right. I think all the time if I could see what I was like a year ago, I would be amazed. I would probably be amazed at 3 months ago. It is just so slow and so terrible that it is hard to remember.
I keep a journal, but even that doesn't fully help as I herx and get take two steps back every time I inch forward.
Thanks for listening.
Hugs, Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Hang in there! Better days are ahead.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
Thanks again to everyone. I wanted to let you know that today looks a bit brighter. You know how this disease works. Up/down/up/down.
Jane - thanks for the note about your daughter. I am glad she is doing better.
Joalo - thanks for the hug.
Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Glad you are having a better day. Let's all hope that the up days become more and more often.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
if your looking while traveling....keep your chin up...one day at a time. your out there , getting your job done and fighting the good fight...big pat on the back.
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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